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- by brownbook Jul 19I have a temporary summer vacation relief assignment helping a family with a disabled 5 year old. He is non verbal, mentally disabled.
He used to be easy going, self stimulating, happy. About a year ago he started having episodes of agitation. He has been through all kinds of tests to find out why he is agitated, the thinking is some kind of stomach GI pain. He has been worked up by a GI peds specialist but just vague maybe this and that diagnosis.
The various doctors have mentioned "okay we don't know what is wrong lets just treat the symptoms for now." His episodes occur every 4 - 6 weeks, several days of agitation upset, non consolable, not sleeping. But so far no doctor has ordered any PRN for agitation for the parents to give, just q HS trazadone for sleep that does not work during these episodes.
What could, would, should, I suggest they ask for in the way of PRN for agitation for a disabled 5 year old?
- Jul 19 by Silverdragon102This actually comes across as offering medical advice, the family need to ask the PCP what they would recommend as sedation when the child has these episodes
- Jul 19 by meanmaryjeanOnce every 4-6 weeks? I don't see the need. And I certainly don't think you need to 'suggest' anything. They are the parents, and are perfectly capable of asking for meds IF THAT IS WHAT THEY WANT FOR THEIR CHILD. Clearly, they don't.
- Well.....I am not giving medical advice. I was listening to the mom express her wonder over and over about "why can't the Dr. just give us an order for something during these episodes." I wondered myself if there was any reasonable, appropriate, PRN medication commonly used for agitated mentally disabled children. I would have the mom ask the Dr. "how about using such and such during these episodes".
I know seasoned nurses who have good knowledge and working relationships with Dr's do say "the patient is doing such and such, I need an order for (fill in the drug) and the Dr. says, yeah sure thanks, give it now. That is why I asked Allnurses.
And having spent a week with the family....well meanmaryjean if you had been with me I think you would understand. Watching a 5 year old pace around the house like a caged tiger, going from room to room, pushing away parents, sleeping maybe 4 interrupted hours a night, maybe then you would see the need. This is not his normal behavior, he can be a giggly, happy to give hugs, quiet, easily distracted, play with toys, child.
- Jul 20 by xoemmylouoxPoor kid. I would definitely talk to his PCP or behavioral specialist about these changes in behavior. Perhaps there is something new in life or in the neighborhood that sets him off? Typically when it is a dramatic change like this, especially when them seem full of anxiety, there is something new that caused the change. It make take some time to figure out what as even the tiniest of changes can thrown these kids off.
- Thanks xoemmylouox, very insightfull answer.
The trouble is everyone has gone over and over the "what in the world is causing this" investigating. After a year of Dr. visits, hospitalizations, changing diet, etc., the episodes seem to come less often but still do happen. The parents were relieved to hear from one doctor. "Okay we don't know what the cause is, lets just treat the symptoms." He is on two prescription meds q HS that seem to have lessened the spisodes. But when he starts one of his cycles of agitation mom wonders why they can't give him some stronger sedation?
I didn't say, but of course know the danger, fine line, of sedating a child in the home. Continuous visual monitoring, need a pulse ox? But honestly I think the parents would be okay (at this point) with having someone continuously monitor the child. "Why can't we try just letting him "sleep it off," seems to be their question?
I wonder what a group home or facility that has severely disabled children would use for PRN acting out episodes like this?
- I just realized, they have to continuously monitor him while he paces around the house, they would probably rather continuously monitor him while he is sedated in his bed.
Again it is just during these every 4 - 6 week "episodes" not a daily situation.
- Jul 20 by JustBeachyNurseEven if it was appropriate to suggest something to the family when on a temp case, especially developmentally disabled child it is impossible to offer a blanket recommendation. I have a few patients with episodic GI pain (some are neuro in origin)
Each of my clients have different drugs and pain management plans. There is no single answer. The only similarity is each has had an intensive eval by a complex care team including GI/neuro GI, pain mgt, developmental pediatrics. And sometimes neurology.
There are a few pedi neuro GI docs in the US. I know Boston Children's & Cincinnati Children's are two.
It is unlikely that I insurance /DME would provide pulse ox or other monitoring equipment for episodes requiring sedation. They would likely require an intensive evaluation by a specialized team with specific recommendations. And a drug trial in a specialty setting with highly trained teams in case of a reaction or over sedation.
It is not common to sedate for pain in a home environment.
- Thanks, I was assuming there might be a lower level type of sedative, pain medication, to try, but I guess not realistic. It seems hard for the parents to get a complex care team approach. They are seeing the kind of specialists you mention, but the specialists are not approaching this as a team effort.
- Jul 20 by JustBeachyNurseMany of the pedi hospitals(CHoP, Boston, Cincinnati Children's ) have complex care teams. I believe all now have pedi GI motility centers. Boston & Cincinnati have pedi neuro-GI. I know Cincinnati neuro GI prefers to consult /offer suggestions via local treatment team rather than have child/family travel to Ohio. That is if the local doc's ego permits them to consult with other teams. This seems to be a big barrier.